The fundraiser at Slow Club. Had an AMAZING time.

I wasn’t looking forward to having to answer a lot of questions about my condition or treatment, especially with this new, big uncertainty I’d been wrestling with over the past week. But there was none of that. It was an incredibly light, fun event. Everything that had been weighing on my mind disappeared, and I enjoyed the hell outta myself.

The turnout was awesome, the food was mouth-watering, and the atmosphere was celebratory. Erin Rooney put on a truly great event. Words can’t describe how grateful I am to her, and to have such wonderful friends.

I’m also grateful to Tom Sewell for shooting video at the event. We’ll get that posted up here as soon as it’s ready for public viewing.

Thanks to everyone for attending and sharing that night with me. I’ll never forget it.

Kaki and I wrote out a list of questions for our meeting with Dr. Kirkwood about the surgery, post-op recovery, and what to expect. This turned out to have been a futile exercise, because I was told in the meeting that I needed another test to determine if I was going to be able to have surgery at all. This was shocking, to say the least. With pancreatic cancer, the alternative to surgery is…well, there is no alternative.  I felt like I had my legs knocked out from under me.

I found out that the the tumor had not shrunk as much as they had hoped, and that they needed to do a laparoscopy (a camera inserted into my abdomen through an incision in my belly ) to look at my liver to see if the cancer had spread there at all. If it had, even the tiniest amount, they would have to cancel the surgery. Though I thought this had long been decided, this laparoscopy was going to truly determine if I actually was a candidate for surgery.

And I was going to have to wait another eight days for it.

It seems that a large part of cancer treatment is waiting. It’s certainly one of the most difficult.

After getting this upsetting news,  I spent the next four days studying what pancreatic cancer was all about, the numbers and statistics, and what was required for the surgery. I was confused: was this test just a protocol? If so, why wasn’t I told about it before? Suddenly I felt compelled to seek out more information, and this exposed me to all the horrible statistics that go along with this disease. It was a very confusing, disheartening, and terrifying period. Everything had seemed set an on track, and suddenly I had no idea what was supposed to happen next, what my options were, what the best course of action was.

One thing I learned was that whoever did the surgey had to have a lot of experience.  Everything I read said this was crucial – that survival rates were directly tied to the experience level of the doctor.

My investigation led me to other hospitals that do the surgery I needed, a procedure called “The Whipple.” I wound up on the phone with Massachusetts General, which is the hospital I grew up with. They still had all my medical records back to the age of two. The delightful lady in the records room gave me a new record locator number and told me to call the oncology department.

One thing I’ve learned about this disease is that everyone involved with it is incredibly dedicated. It’s a noble thing, because the survival statistics are so grim.

The woman in oncology called me back in 30 minutes from her vacation in Florida and talked to me for about 45 minutes. At the end of the conversation, she told me to have all my records sent to Mass General and she would have everything reviewed by a pancreatic surgeon, free of charge.

I had a similar conversation with a woman at Johns Hopkins later that day. These people are truly committed to helping; I found these institutions via the internet, not through some connections. And their response was amazing.

I also found some places and doctors that were recommended by my friend Naomi Dabby. Naomi is a doctor in San Francisco who I met at Burning Man just once, but she has become my biggest medical advocate.

She spent several days seeking info on Dr. Kirkwood, and what she came back with helped reassure me I was in good hands. Dr. Kirkwood is very experienced and very highly regarded by her peers.

I got this information as I walked into a friend’s house to write a letter to Dr. Kirkwood asking some pertinent questions about her experience, the procedure, and my options. As I finished the letter, my phone rang. It was Dr. Kirkwood.

She had received a message telling her to call this number, it was urgent. I hadn’t called her, but my mother had. Dr. Kirkwood was teaching at the time, but she took time out from her instruction to speak to me for around 45 minutes. She was incredibly gracious, generous, and understanding of my situation.  I hung up the phone with my fears much assuaged.

Now all that was left was waiting for the laparoscopic procedure on Tuesday.

One of the side effects of chemo is something called chemo brain, which was in full evidence on Monday when I forgot I had tickets to see one of my favorite bands, TV on the Radio.

Fortunately, Dillon does not have chemo brain and reminded me. I danced till midnight at the show, in anticipation of the good news I was expecting the next day when I was to schedule my surgery with Dr. Kirkwood.

One of the wonderful things to come out of this whole situation has been reconnecting with some really exceptional people.

This was especially true on Saturday when I got to spend the afternoon with my friends Ron and Gail and their daughter Sky. We ate at our favorite sandwich place, Mario’s Bohemian Café in North Beach.

Saturday night we spent at my friend Will’s housewarming.  We didn’t get home til around 2 am. I’ve been feeling more than normal lately.  In fact, some days I feel even better than I did before I got sick.

Went in for the CAT scan. Just a routine test. Spent the week getting better.

The week was pretty normal as far as the after-effects of chemotherapy go. The only noticeable difference has been the persistence of the neuropathy. Neuropathy, for the uninitiated, is a catch-all term that refers to damage or interference with the nerves. For me, it manifests in a very heightened sensitivity to cold in my fingers and toes, and numbness in my two front teeth. Also a heightened sense of smell.

So. Went in for the CAT scan but knew from past experience I wouldn’t know the results til Tuesday, when I would meet with Dr. Kirkwood. Based on how I was feeling (great, overall), I assumed the test would show the tumor had shrunk to the size of a raisin, or disappeared altogether. But experience has taught me that what I assumed and what I felt didn’t necessarily matter.  I would have to wait to talk to Dr. Kirkwood.

After the scan I went home, and Kaki and I got ready for Whit and Nicole’s wedding reception at Delfina. Being at public events is interesting for me now. People are always surprised that I’m there. I think they expect me to be more knocked out by the chemo. Based on what I’ve learned about my chemo regimen, I can’t say I blame them.

It was a great night. It was wonderful catching up with so many people I hadn’t seen in a while. It was great to be there, and to offer a toast to the happy couple. And the food was delicious – I ate till I felt like a goose being prepped for pate. I had to bring home my dessert (a strawberry and shortcake tort) because I was simply too full to eat it. It was delicious when I finally did – the first dessert I’ve eaten in many weeks.

We left the reception to pick up Robert and Christine at SFO. They spent the weekend at our place. It was great to have some East Coast energy in the house. Technically, Robert is responsible for hiring the “dinner band” for my fundraiser, since he introduced me to them via the internet. You can find them  on this website via the link for “Inspirational Music”

Starting Monday my condition was 110%. The only negative aspect is that I wake up between 4:30 and 5:00 AM and can’t get back to sleep.

Despite this, my well-being allowed me to work on the kitchen job that’s been hanging around my neck like an albatross since December. I put in 31 hours this week. Some would say this is overdoing it, but my constitution is such that all this activity is actually strengthening my body. I’m looking forward to being weighed at my next chemo on Thursday.

The approach of chemo  has always been something I’ve dreaded, but my newfound strength has given me some comfort in the face of it.

Especially the realization that it’s my last one.

I’ve spent the past 4 days struggling through a cold. Working at about 60% capacity.

Feeling a little better each day.  I’m looking forward to the CAT scan on Friday, which coincides with the wedding reception of my dear friends Whit and Nicole.

For the past 3 days I’ve slept til 7 am, thanks to a concoction Kaki developed combining homeopathic and other ingredients.

We got our tickets to Burning Man in the mail. Now the goal is to try to get surgery in time to be well enough for Labor Day weekend.

Looking forward to my friends Robert and Christine visiting from New York.  Robert is the guy who does the spectacular balloon art at Burning Man and other festivals.  For those of you who haven’t seen it, imagine a 2500 ft. long strand of balloons, pinpoint lights, and bells arcing up into the night sky. Or better yet, here:

All this will be a good distraction until Monday, when I meet with Dr. Kirkwood to decide about the surgery.

The day I escaped my mothers womb 46 years ago. I woke up with the same cold, but feeling a little bit better.

Decided to got to my friend Cal’s for an afternoon brunch. Luckily for him and Kaki, and everyone involved,  I was somewhat out of it and thus completely unsuspecting and unaware that there was a huge surprise party planned for me.  This even though one of the guests rolled up to the door just as we arrived.  I wrote it off since it was Greg Piper, and it was totally feasible he was just randomly biking by.

This was just the medicine I needed to lift my cold – at least for the afternoon. And it was a good practice run for the big dinner I’m having on May 15th.

I received several lovely gifts, one in particular I would like to note that came from Lizzie Ross. Somehow she had a roll of film that was taken at my son Dillon’s high school graduation seven years ago.  She selected the best one and had it framed.  It was one of the most surprising gifts I received, and also the loveliest. Thank you, Lizzie.

Superman is dead.

Killed by the shaking of some random hand, which transferred germs. Germs containing just enough Kryptonite to bring the Man of Steel crashing down.

This is a dramatic way of saying that somehow I have caught a cold. Normally when I catch a cold, I get sick for five or six hours in the morning, throw up, then find a spot to park my car in the sun and sleep, and sweat it off. I’m usually fine by evening.

I employed this method to no avail, and spent Friday and Saturday feeling awful .

I normally wear a safety helmet when I go to chemo, one I got at the Alameda Flea Market.

It’s a vintage helmet, probably originally for a civil defense worker in the 1950’s. I’ve worn it each and every time I’ve gone to chemo, and since this was my last scheduled session, Kaki decided to don hers as well. So we  set off enthusiastically in our helmets for our meeting with my oncologists, celebrating that this was to be my last chemo.

To out chagrin the doctor, although very entertained by our positive attitude, informed us that this was actually not the last chemo. Normally, he explained, chemo continues after surgery as well, sometimes for six months to a year.

So we should hang on to the helmets.

As a side note, I feel great and have a great sense of comfort from my oncologist and my surgeon. I feel like I’m in good hands.

My oncologist has very smartly disseminated information to me only when necessary. For example, it wasn’t until this last chemo session that he informed me that I was on the most brutal chemotherapy regimen available.

This was subsequently confirmed by two doctors I met who each said, “Huh, I’ve never seen someone on both oxyplatin and folfirinol.”  Both remarked on how well I was doing, considering that each one separately usually knocks people out.  Their comments seem to prove that my natural physical health and strength have been my greatest gift, besides the presence of Kaki with me every day.

It should also be noted that upon being weighed, I had gained 9 pounds.  All thanks to my Mendocino All-Natural Weight Gain Program. Smoke an ounce, gain some pounds!

During the meeting with the oncologist we  scheduled  a CAT scan on May 6 to reimage the tumor and decide if it has shrunk enough for surgery.  This will be decided by my surgeon Dr. Kirkwood on May 10. Although I am looking forward to all of this ending and getting back to a normal life again, the concept of the surgery is indescribably overwhelming. Especially now that my poops are so brown, which is a direct sign that my pancreas is functioning properly.